I was down in one of the Caribbean islands when someone called out to me, “Is that the real Sea to Sea?” I was wearing a T-shirt from my bicycle trip from Vancouver, BC to Cape Spear NFD. There was an immediate connection.
I often glance at the t-shirts others wear. They might be promoting a product. They might identify a person’s interests. Or they might be the only t-shirt clean enough to wear that morning when they woke up.
A Shirt of a DifferentColour
When I’m wearing a t-shirt in public I’m often aware of the momentary glance that people give me. I do the same. A simple curiosity. It’s like a reflex as part of being aware of my surroundings.
I have one t-shirt that doesn’t pass the test of a ‘momentary glance’. I notice I often receive a lingering appraisal when I wear my ‘Neurodiversity’ t-shirt. I imagine it’s a puzzled look. It’s like it take a longer moment for people to absorb the ‘message’. It’s like people aren’t sure what to make of it.
I realize the image is not necessarily familiar. The writing is not part of most people’s common everyday vocabulary.
Davis Street (West Vancouver)
One day I was walking through Davis Street, the LGBTQ2S+ community in West Vancouver. I happened to be wearing my ‘neurodiversity’ t-shirt. That was the first time I encountered people who went beyond the lingering glance. People responded to the message on the t-shirt. They would engage me. Some identified with the message on the t-shirt. One person, who did not have a brain injury, commented that we both have brains that work differently.
I felt I was around people who experience diversity at a different level. They could relate to being part of social diversity. Socially atypical. The beauty of people reaching out to others who are not part of the social main stream created a bond and social opening.
When I receive a lingering glance that is my tell that I’m likely looking at a neurologically typical person. A person who maybe lacks a level of comfort with social diversity. They’re more comfortable with the general societal norm for public presentation.
Being neurologically atypical I have difficulty with certain types of public situations that would be considered normal. I make personal adjustments for factors that affect me due to the lingering affects of TBI.
My experience in Davis Street makes me realize how being neurologically atypical makes me relate to people in a different way, particularly those who are atypical in their own way.
It was a sort of graduation. There was no ceremony. There was no diploma handed out. I graduated at the age of 66 as my own Certified Personal Brain Injury Detective. Nice title. I just made it up.
It happened during a quiet discussion with my OT (occupational therapist) that she told me I was ready to move on without her regular support. We had just finished a discussion of how I had recently navigated three significant events with understanding and a comfortable level of success.
It’s been three and a half years of working with an OT training me to be my own detective. Learning to recognize my limits in living with ABI. Learning to recognize my limits focused on recognizing signals when I was reaching my limit, deconstructing each situation that put me into sensory overload and developing strategies to prevent sensory overload and avoid neural fatigue. Learning to avoid neural fatigue would mean avoiding the lost days of recovery time which regularly resulted in having most of my activities come to a halt or often being done with great effort and difficulty.
When I began working with an OT she outlined two clear goals:
She would do the initial detective work of finding the details and extent to which my acquired brain injury was affecting my life. (In saying that she highlighted that no two brain injuries are alike.)
She would train me to be my own detective and develop strategies for compensating for my new physical, cognitive, emotional and social limits.
Charting a Unique Course
Learning to be my own detective reminded me of signing up for a college or university program but with one significant difference. The main difference was started a course when I was least prepared to learn something new. The main challenge being that my memory had been seriously compromised. At the outset my memory was functioning at less than 50% of my pre-accident level. The key ability that I needed for this new venture was one of my seriously compromised areas.
Learning to plan became a key component to adjusting to what a friend called “a repurposed life.” Living life after a life changing injury. Every day I needed to plan what, how much and what type of activity I hoped to accomplish. If I thought I could complete five things on a good day, I should expect to finish three. Or if the day didn’t go well, be satisfied with completing two things. Working overtime was definitely not an option.
If I decided to run some errands in town, a ten minute drive from home, I needed to plan how many I could reasonably manage. The number of errands would depend on the nature of the errand. The greater the cognitive demands the fewer errands I should expect to complete. If I’m making some purchases my endurance could depend on how well the sales staff helped.
If I am taking a trip out of town there is even more planning involved. The planning involves where to make stops and who drives which part of the trip. A trip without planning is almost guaranteed to cause me neural fatigue and wasting time with recovery.
The success of each day was largely dependent on developing mindfulness. That meant learning to be cognizant of how I’m doing, recognizing signals my body is giving me. The signals by their very nature are usually subtle. Recognizing the ‘little nudges’ before the sensory loading gets out of hand is key. If I miss the ‘little nudges’ I was definitely going to be into a 3 to 5 day recovery time.
I’ve learned to carry an ’emergency’ kit when I’m away from home for a day or more. The kit includes a few basic but crucial items: headphones (to block disturbing or loud noises), granola bars (snacks to keep my energy level up) and a pen and paper (for times when my sensory overload is too high and I’m not able to talk).
Moving On – On my own
Graduating is bitter sweet. First of all I’ve learned skills I would rather not have needed to learn. Secondly, after working closely with an OT for three and a half years, it’s like saying goodbye to a good friend, a friend who knows me almost better than I know myself.
At the same time, graduating is an affirmation that I have learned the basics and that I have the skills to successfully continue to fine tune my lifestyle to fit my needs and abilities.
Part of my training has focused on setting goals. A key factor is deciding on goals that will allow me to find new ways to be a contributing member in my community.
One of the first questions my psychologist asked me when starting treatment two years ago is whether I thought there was a purpose to the injury that I received. The question did not strike me as strange. I had been contemplating a phrase that a friend who has a debilitation disability uses; living a repurposed life.
It’s been a slow process to begin to recognize my new and unplanned repurposing. I pray for increased clarity for this part of my journey.
I recently attended the wedding ceremony, reception and dinner of a niece. It was exhilarating to experience the celebration without having to go through a noticeable recovery phase in the days that followed.
In the days leading up to the event I made sure I didn’t take on anything demanding in my areas of vulnerability, or agree to take on something new and untried. I maintained my regular cycling routine as cycling contributes to recovery if things have not gone too far south. What I can’t control are emotional setbacks. When they happen I just need to ride it out.
I had a request from my niece to bring my yard sized Giant Jenga to be used in the time between the ceremony and the dinner. I decided to replace the cardboard box and build a proper wooden carrying case for the 48 wooden blocks. Working alone building the carrying case was a good activity to keep me focused and experience minimal sensory loading. After completing the carrying case I brainstormed with my daughter about making another yard game. With her help we made a yard sized Giant Boogle game. After cutting out the 16 cubes we had the time consuming task of hand painting the letters. With the cubes having 6 sides we realized that we were painting more letters than if we had made a yard sized Giant Scrabble game. Once the lettering was finished I decided that there was enough time to make a handy carrying case to complete the project.
Completing the wood working project was helpful in other ways as well. Having the opportunity to contribute to the wedding event was heart warming. That would help offset some of the disappointment if I experienced neural fatigue and had to leave partway through the celebrations.
The Day of Planning
My sleep pattern has been improving somewhat. However, the day of the event I woke up at 4:30 am. After being up and about for a couple hours I was ready for a nap. (It always works best if I take in one nap each day.) By 10 am my nap was done for the day.
I made sure I had my rescue kit with me. Having the basic assists that would help ensure success. The main thing I needed was having my ear plugs with me. I was expecting lots of music with maximum of volume. I didn’t want that to interfere more than needed with my participation.
The drive into the city was about an hour and a bit. I was fine with doing that trip without a break. I then had a couple of hours to relax before arriving at the event. The last part of the trip was by transit with someone else leading the way. That meant no additional demands in figuring out transit routes, transfers etc.
At the Event
Arrived at the wedding venue with enough time to be able to mingle with other guests was helpful. I usually make a point of keeping conversations to a one-on-one or something close to that. Larger social groups adds too quickly to my sensory loading.
Fortunately part of the event took place outside while the major part of the event was indoors. (Indoor acoustics are much more troublesome on several levels than outdoor acoustics.) I was mindful of the noise level while mingling indoors. I was judicious about using my ear plugs when I was indoors. Unfortunately the ear plugs are not conducive to conversations. (Maybe I should consider taking up lip reading.) I would wander out of the building at regular intervals. It’s when I stepped outdoors that I would realize that the noise had started to build my neural fatigue. I made a point of stepping out before I noticed signs that my neural fatigue was starting to build. (I usually don’t notice the buildup when I’m in the moment.) In that way I was able to minimize my recovery time.
After the wedding ceremony, part way through the reception time I took a break away from the venue. It had been impractical to bring my bike, so I had slipped my unicycle into the car before leaving home. The vigorous physical activity of cycling, which is even more demanding on a unicycle, is much more helpful as a recovery activity than simply going for a stroll. After cycling a couple kilometers I was ready to rejoin the event.
During the dinner I stepped out when volume went too high. I stayed near by so I could step back in when there were speeches given, games were played or toasts were given. I did not feel conspicuous about stepping out as there were always a few people milling about. (I did note that some guests sat in the same place for a good part of the event. Hard to imagine doing that.)
By the time the event was well underway I was still managing my sensory loading and neural fatigue very well. Later in the evening during the dance I decided to try unicycling to the rhythm of the music. This basically involves idling and keeping rhythm. This was the first time in five years that I had attempted that. I was pleased with my level of endurance. I made sure I was wearing my ear plugs. Keeping the rhythm, the focus and the vigorous physical demands worked well.
After the Party
I left the wedding celebration close to midnight. It was a record for me in recent years. I stayed with family in the city rather than doing the hour and some drive home. After such a full day and a busy evening it took a long time before sleep overtook me. I needed quite a bit of time to wind down.
I slept late and felt surprisingly good when I woke up. After a hearty breakfast I decided to do some cycling. In about an hour I covered close to 6 km by unicycle. (The effort it takes to unicycle that distance would translate to about 24 km by bike).
Arriving home mid afternoon was so encouraging. I had not crashed. I had not arrived home exhausted. I had energy to carry on.
This was one event with good memories all around. A reason for ongoing celebration. Celebrating successful planning. Celebrating not needing to recover. Celebrating supportive family. Celebrating life!
Made two trips in the early part of the summer, both carefully planned yet each turned out quite different. And so the detective work continues. How to travel with minimal setbacks so that neural fatigue from sensory overload doesn’t throw a monkey wrench into the enjoyment of a trip. I would say it takes forensic planning to increase the likelihood of a successful trip.
Flight across the country
The first trip was a thirteen day trip to the west coast of the country. A trip that involved a short car ride and a commuter train ride at both ends of a four hour flight. The plan was to make the time at our destination long enough to get into a familiar routine. On the whole the trip went very well except for one PTS trigger event that effected me for two days. That trigger event could have happened anywhere so I don’t consider it in determining that the trip was a success.
During the thirteen days away from home I was able to maintain a routine that allowed me to keep sensory loading within a manageable range. That meant I wasn’t dealing minimally with neural fatigue.
Drive across the province
The most recent trip was a nine day 1600 km road trip. To make the 800 km drive to our destination manageable we did trip over a two day period traveling about 400 km each day. The first day of driving seemed to go well most of the way. However, by the time we have covered 400 km neural fatigue had set in. That was despite planning for two pit stops. The first pit stop was at IKEA, a great place to sneak in a 45 minute nap. Consider that a promotional plug for IKEA furniture.
The second day left me even more fatigued. Two days of driving had a cumulative effect on my sensory loading. I hadn’t considered waiting a day to recover a bit before completing the second leg of our trip. When we arrived at our destination I experienced an even greater level of neural fatigue. At that point I was too tired for a physical workout, but too restless to get a good night’s sleep. An unfortunate combination.
When I’m dealing with neural fatigue it effects my sleep. The greater the neural fatigue the weirder my dreams. If my neural fatigue is in the extreme I’ll likely experience unpleasant dreams or nightmares. This happens when my brain is too scrambled to distinguish between what is reality and what is a dream.
Getting into a routine
The morning after arriving at our road trip destination I did a comfortable 35 km bike ride with minimal climbing. I had a nap following that two hour ride. I kept up this routine each morning for the next three days. It wasn’t till the third day that I was able to clear the neural fatigue. Relief came on the third day following an 85 km ride which ended with a 15 minute ride through pouring rain. It was a relief to finally feel normal again.
A few days later we were scheduled to head back home. The drive the first day went very well. It was a relaxing drive along secondary roads for most of the way. Yet this same stretch of road had left me in rough shape when we drove it a week and a half earlier.
Seeing how well the first leg of the return time went reminded me of the importance of starting a road trip with minimal neural fatigue. The focus and attention that is a key part of driving will contribute to neural fatigue. On the first leg of the return trip I also made a point of taking longer breaks. It seems like the combination of minimal traffic congestion, a relaxed speed (mostly 80 km/hr) and well timed breaks is a workable combination.
Three days later we continued with the second leg. The second 400 km leg of our trip left me with significant neural fatigue. We made two one hour pit stops. However, that didn’t compensate for the intensity of the traffic. The combination of faster speeds, multi-lane highways, and increased traffic congestion is difficult to manage. Can’t do much to work around these factors.
On arriving at home late in the day I was dealing with a heavy dose of neural fatigue. Being on home turf gives me a few extra options to deal with it besides taking out the bike and cycling for a hour or so. When I arrived home I considered napping briefly but I was too restless to manage that. Instead I walked around the yard for awhile. After about fifteen minutes I started hoeing a section of the garden building up a bit of sweat. That helps create physical fatigue which is much more conducive to minimizing insomnia.
Factors to consider
The detective work work of determining what factors most directly contributed to neural fatigue is based more on circumstantial evidence rather than concrete evidence. It is usually a combination of factors that creates a situation that puts me at my limit.
Weather is a factor I always need to consider. When the weather turns hot, the effects of sensory loading and neural fatigue compound the situation. Even when driving a car with air conditioning, there is the non-driving time to consider.
Both sensory loading and neural fatigue have a direct impact on the quality and length of sleep.
When driving, the speed of the highway and the amount of traffic congestion are significant factors. Getting into a traffic slowdown or a stop and go situation is not too problematic because everything happens at a slower pace. With the pre-collision feature on the car the stress of rear ending the car ahead is greatly minimized.
The length and quality of the pit stops. Having a familiar pit stop that allows me to take a nap is ideal. Unfortunately, the additional pit stops makes every out of town trip a bigger ordeal. That does add a level of stress to each trip when considering any other passengers in the car.
The vestibular challenges caused by the repetitive motions associated with travelling by car are much more pronounced than travel by air. Roads with serious pot holes or concrete surfaces with section breaks are most likely to cause an accumulated affect.
It helps to have nutritious snacks both in the car. Anything that helps to maintain my energy level is beneficial.
Each trip involves a discussion and plan of who drives the different legs of the trip. Being a passenger contributes to sensory loading and neural fatigue in a different way than being the driver. It would make things very simple if being a passenger had a zero impact on me.
Despite forensic planning it’s becoming clear that it is not an exact science guaranteeing a foolproof solution. For each out of town trip I will continue to plan for recovery time. That means not having any commitments for the first couple of days on arriving at home.
P.S. Since I published this blog posting in the middle of my setback I want to provide an update.
It took me a full week to shed my fatigue and be able to function reasonably well on a daily basis. During my week long recovery time I had a difficult time dealing with strenuous physical activity. This included not biking at all. Of the four areas that put me at risk of neural fatigue, it’s the emotional loading and the resulting neural fatigue that has the slowest rate of recovery.
Fortunately I rarely hit a ‘perfect storm’ of several emotional events converging at the same time. One can remove onself from a social setting that is causing fatigue, or take a break from a cognitively demanding activity that is causing fatigue. However, taking a break from an emotional experience is a whole different matter. The emotions and the events that create it linger in a much more pronounced way than other matters which cause neural fatigue.
Most of my challenges when it comes to managing my ABI symptoms happen when I’m away from home when my routines and familiar places are disrupted. When I’m home things are generally predictable. If I get into an unpredictable situation, being home allows me to return to a reasonable level of daily functioning within a day or so.
Recently that pattern was disrupted. I usually don’t post a blog while I’m at loose ends. This is for two reasons:
I usually choose to share once I’ve more of less figured out what is going on in my recovery strategies.
I usually lack the energy to post a blog or lack the cognitive coherence till the neural fatigue clears. Set backs often involve cognitive overload and so I need to consider the demands I put on my brain.
This time I’m in the middle of a multi-day slump with cognitive and neural fatigue. My ability to deal with situations is at a low point. I’m not adverse to having people around me but as soon as someone drops in for a visit, not matter how brief, I realize how fragile I am.
When I have a visitor I will muster my energy, especially after a nutritious snack, and manage to participate in a limited way in the visit. Receiving a visit when I’m at a low point helps relieve some of the isolation while at the same time it accentuates the isolation that comes with living with ABI.
How Did I Get Here?
The discouraging part of hitting a low point for several day while at home is the mystery of determining how I ended up there. This week there were no challenges such as I am accustomed to dealing with while traveling or even being out of town for a day. I’ve been close to home all week. Haven’t been further than 50 km from home and then only for a few hours.
I was first aware of my current state of ABI affairs the morning after attending the Fourth Line Theatre play, Carmel. I have been attending the Fourth Line Theatre on an annual basis. Attending a play usually turns into an event with a few friends as I did this week.
The play Carmel was emotionally taxing for me. Even though I know it’s a story, my brain lacks the filter that would otherwise allow me to keep better emotional distance. With a movie I’m better able to keep a bit more emotional distance because it is a less personal media.
In the case of watching Carmel, there was also the real life emotion of watching a young actress doing such an wonderful job, acting in real time. The emotion of the story was further highlighted with live music interspersed throughout the evening with lyrics that were both humorous and emotionally touching.
The intermission was a timely break for me to walk away from the crowds and take in the restful sounds of the rural landscape as it approaches sunset. Needless to say the second half of the play added to the emotional sensory loading that was only partially shed during intermission.
The Day After
It was the morning after the play that I became acutely aware of the challenges I was dealing with. I had no commitments for the day so that was in line with good ABI daily planning. The plan was to take it easy, do some gardening and have a mid day nap.
Technical Support Line
But life intervenes. The internet has been down for a day or more. And so I was called out of the garden to deal with the phone call with a technician from our ISP. All seemed to be going well. The technician was polite and was not trying to rush me. In addition he insisted with staying on the phone till he was double sure that every device was connected and working properly.
When things were finally resolved, after about an hour with the technician, the full force of my neural fatigue hit me. My first comment when I got off the phone was that he talked too much. Various times as he was stepping me through the trouble shooting he would keep talking.
I would tell the technician that I got it. He would keep explaining what to look for and what else might be helpful. Unfortunately I’m unable to block out the additional irrelevant information. At the same time I’m trying to make sure I don’t miss his next instruction. The cognitive demands of balancing this was slowly but surely contributing to neural fatigue.
The other challenge is that he was not good at listening. He asked me to identify the brand name of the router – a Belkin. Even though I told him he kept referring to a D-Link router and giving instructions based on a D-Link router.
Had I realized what his over explaining was doing to me, I would have stopped him. It would help if he would exercise some economy in giving instructions. (That’s my reminder for the next time I’m on the phone with a technician.)
My second matter of life intervening happened a few minutes after the phone call. It was my solely my decision. No pressure except for the pressure I put on myself to get rid of an annoyance. So I felt it was an urgent enough matter. The patio door screen had been jammed for the past couple of days. Since it’s the most heavily used door in the house I decided to trouble shoot the issue. It would just take a few minutes I told myself.
After about 15 minutes I got frustrated and lost patience. I should have realized that dealing with neural fatigue following the hour long phone call with the technician is the worst time to tackle a problem solving repair.
I walked out of the room, lay down and slept for two and a half hours, waking up shortly after lunch time. The rest of the day I made no attempt to be productive. The nap did little to reduce my neural fatigue. I would move between doing a bit of gardening and reading or else just sit and ponder. This went on for the next couple days.
Getting a Handle on Myself
My emotional gauge is still fluctuating widely. As I reflect back on the earlier part of the week there was a number of things that happened that contributed to my current state. Two friends had shared some upsetting news. In both cases the news has been gradual in the making. The upsetting news had elevated my emotions before attending Fourth Line Theatre. Maybe that’s why the play Carmel had a bigger impact on my emotions than I expected.
It’s Like Martial Arts
In martial arts it’s not the strongest or the biggest person who overpowers their opponent. It’s the person who knows how to make a timed mechanical move with minimal energy to put their opponent off balance. The greater the control and the better the timing the less energy or strength that is needed.
When I look back on the last few days it isn’t that I have encountered an unusually major event that set me back. It’s more like a series of slight moves that has bit by bit put me further and further off balance. In between there hasn’t been time to recover my balance. It wasn’t till I was too far off balance that I realized what was happening.
And so, I will just have to give it time. I know from experience that gradually I will improve. And then it will seem like suddenly I’m in a good space again.
I’ll get there:
Keep a familiar routine.
Don’t take on any significant commitments.
Sleep and nap
Keep up a reasonable level of physical activity.
The goal is to replace neural fatigue with physical fatigue.
Wab Kinew’s book, The Reason You Walk, Viking (Penguin Group) 2015, is a read that will give you a deeper appreciation for the experiences and eventual resignation tendered by The Honourable Jody Wilson-Raybould. (February 12, 2019) As an indigenous member of parliament much of what it entails being a member of the Liberal Party of Canada went contrary to her cultural roots. Kinew also gives some insight into why she did not simply sign onto another party despite being warmly invited.
Wab Kinew has given us a book with profound insight into living as an indigenous person in a dominant culture in which the quest for mutual understanding can be a life long quest. In the process he shares some insight that is applicable across cultural lines that forms the building blocks for a strong community, namely a strong family.
I asked him to repeat himself.
“If a son helps his father when he is sick, then his son will help him when he is old.”
Ndede had stood by his father in the residential school cemetery all those years ago. In turn , his son and daughters has stood beside him as he walked to the spirit world. Standing for him there, waiting on that side, were his two eldest boys. Now, in this place near the Gulf of Aden, on the other side of the planent from Lake of the Woods, another child stood beside his parent.
We stand by those who came before us, hoping that those who ome after us will honour us in the same way. We love, and we hope to be loved.
Whether we are young or old, whether our skin in light or dark, whether we are man or woman, we share a common humanity and are all headed for a common destiny. That should bind us together more strongly than divisions can push us apart. So long as anything other than love governs our relationship with others, we have work to do.
When the division s win out, we need to work hard and bring that which has been broken apart back together again.
We ought to recognize that our greatest battle is not with one another but with our pain, our our problems, and our flaws.
To be hurt, yet forgive. To do wrong, but forgive yourself. To depart from this world leaving only love. (page 268 Wab Kinew 2015)
Wab Kinew explains the title of the book with four interrelated ideas:
In the little roundhouse in Wauzhushk Onigum, I had been taught the song when I was young. Kwekwekipinessiban explained the lyrics in Anishinaabemowin, and Ndedeiban (‘iban’ is added to the person’s name in referring to them after they have died.) translated the teaching to me. I had been told the four layers of meaning to the words “I am the reason you walk.” delivered as though it is God speaking to you. Now the Creator was speaking to my father.
I am the reason you walk. I created you so that you might walk this earth.
I am the reason you walk. I gave you the motivation so you would continue to walk even when the path became difficult, even seemingly impossible.
I am the reason you walk. I animated you with the driving force called love, which compelled you to help others who had forgotten they were brothers and sisters to take steps back toward one another.
And now, my son, as that journey comes to an end, I am the reason you walk, for I am calling you home. Walk home to me on that everlasting road.
With a loud, echoing drumbeat, I brought the song to an end.
(page 252 Wab Kinew 2015)
Wab Kinew’s vision for the future against the background of colonization and the attempts to take the ‘Indian out of the person’ by way of the genocidal policies of the Indian Act that resulted in the ‘residential school system’ is a complex issue that puts a lot of responsibility on indigenous people.
Challenges remain. First Nations children begin life facing longer odds on the road to success than others, because they lack equal access to education , health care, and social services. We must correct these problems where they exist. Indigenous people must also take more responsibility for our own affairs, which is something most members of my generation strongly believe.
As a result of colonization, many Indigenous peoples have been prevented from contributing fully to our globalized society. Consequently, the Indigenous cultures practised by thoses peoples have not been able toshare their stength, wisdom, and beauty with the rest of the world.
I envision Indigenous people rising above their challenges to become the leaders this world desperately needs. I see them helping to chart the way to a more sustainable society and a more meaningful way of life.
Many solutions to the challenges of our time – from income inequality to environmental degradation – can be found in Indigenous cultures. If we start to see the earth as our mother, we will likely chart a course to a more environmentally friendly way of life.
If we grow up hearing that the chief ought to be the poorest member of the community and that true leadership is about service and sacrifice, we might think harder about income inequality.
And if people on opposite sides of seemingly intractable showdowns over land and resources began to take one another as kin, perhaps we might find peace in situations that we currently consider lost causes.
While there are political and economic lessons to heed, we cannot forget that, at its core, reconciliation is a spiritual and emotional journey.
My heart still aches for the man who walked ahead of me on this path, that man I see now only in visions. (page 266-7 Wab Kinew 2015)
A recent incident reminded me that, since my injury, dealing with traffic carries the risk of seriously changing the trajectory of my day.
Being in a car
Since my injury I have increased my endurance riding in or driving a car from a half hour to an hour without needing a break. At times I’ve managed over two hours without a break.
I’ve also improved my recovery time following a car trip from needing three or four days to recovering in as short as a couple hours.
Having done trips, some of a couple hours and some approaching five hours over the last four years I’ve had opportunities to fine tune the drive to help me arrive at my destination in relatively good shape. Well, let’s say most of the time.
When I’m not in a car
What is much less predictable for me are traffic situations when I’m a pedestrian. These are fortunately few and far between. However, when they do happen they have a significant effect on me.
I recently dealt with such an incident. Prior to my injury I might not have even noticed anything or forgotten about it a short time later.
I had just crossed a major intersection while on a morning walk. It was the morning rush hour. Suddenly I was aware of a sound of tires of a car out of control. It was not very loud but a definite change from the hum and cadence of the busy commuter traffic.
I noticed my body suddenly tense up. I was expecting a follow up sound, that would have mimicked the sequence of the accident that caused my ABI. There was no follow up sound other then a quieter repeat of the ‘out of control tire’ sound.
Next thing I knew I was in tears. Both the noise and my reaction to it took me by surprise. This kind of situation and response hadn’t happened in a long time.
What helped to reduce the stress of the situation was being aware of trigger events when living with post traumatic symptomology.
I continued my morning walk, though I was in a hyper vigilant mode while there was traffic nearby. This was even more apparent at each busy intersections. I found myself in tears off and on for the next couple hours. The slightest change as I walked would set me back.
I continued my walk since physical activity that has a simple rhythm to it along with low cognitive input I find helpful for recovery. (I find cycling the most helpful but I had no bicycle available. The pedaling action creates a more controlled rhythm than walking.)
Longer term effects
As long as I was walking I was doing reasonably well. But I couldn’t keep walking all day. I returned to my lodging place after walking 11 kilometers.
For the rest of the day I was dealing with neural fatigue. I had a short nap after my walk. That did not improve my condition by much.
As the day progressed I was dealing with a low grade headache. In itself not too hard to manage. It was the type of headache that I’ve come to recognize as minor brain swelling.
I found myself operating in a non-verbal mode most of the day. Talking required too much energy. I needed to conserve my energy to simply get me through the day. By early evening and a second nap I had enough energy to talk.
After my morning walk I took a shower. The sensation of the water, particularly on my head was very difficult to handle. It was a clear indication that I was dealing with sensory overload.
Dealing with ABI related effects while traveling makes recovery more difficult. The disruption of routines and a loss of familiar places means I need to be more cognizant of what is happening around me.
I’m glad I wasn’t asked to give input on the plans for the day. That takes too much thinking – too much neural activity. I was fine with simply going along with what was being planned or kindly opting out. I went along for the car ride which went fine. The ride was under an hour so that helped.
I joined in for a couple hikes. That was good but I needed to set my own pace. It takes too much neural energy to match my pace with others.
I opted out of swimming. The sensory loading of dealing with water was out of the question. The fact that the swimming area was fed by a mountain stream would compound the sensory loading.
Evening of the first day
Late afternoon I had a second short nap. After supper my level of fatigue had improved. Conversation was easier and therefore more enjoyable.
My sleeping pattern had been working very well for me for the past number of weeks. That night things did not work out. Well past midnight sleep still seemed a long way off.
Sense of humor
When I looked back on the day I realized I had room for some humor. Just before starting the hike near the mountain stream a couple visitors at the park stopped me to ask about wildlife. They wanted to know where they could see some wildlife. I mentioned that there was a warning sign at the park entrance that there was a bear in the area.
The visitors wanted to see the bear and wondered how to call it. I suggested calling the bear “Freddy”.
My Recovery Strategies:
– Lie low for a day or two.
– Maintain my basic daily routine.
– Stay physically active.
– Eat or snack regularly – build up energy level
– Minimize decision making.
– Minimize cognitive activity.
– Spend time outdoors in a natural environment away from city noises
– Journal about the incident (I choose to do mine in the form of a blog posting.)
Over time I have added to my list of strategies.
After being wide awake till the wee hours of the morning I was pleased to have slept a couple hours later than usual. That was helpful. I noticed a significant improvement in my energy level.
I not long into the day I noticed that I was still emotionally quite vulnerable.
The plan for the day was to going biking with the two of us. Bikes were rented and we headed out. My goal was to get about 40 or 50 km in. I didn’t want the ride to be too short since I find cycling helps to clear my sensory loading.
It was a cool and breezy day. We had decided on following a rail trail bike path. The bike path being well away from traffic most of the time, proved to be a good choice. By the time we finished the ride we had covered about 100 km (60 miles). I was pleased with how the day went and the progress of my recovery.
Having put in a long day of vigourous activity, and having taken only a short nap, I was pleased to get a good night’s sleep. We would be leaving the city today and spending several hours traveling by car and ferry.
I was up early so decided I would start the day with a good bike ride. Fifty kilometers later I was back for a second breakfast. I had time for a short nap before helping pack for the trip.
I was in even better shape today than I was a day ago. All very promising. That is till the ferry was ready to pull away from the loading dock. There was a blast of the horn. I should have expected that but hadn’t been paying attention. It lasted longer than the blast we had a week ago coming to the island. That one hadn’t effected me beyond the initial startled response.
The ferry horn blast today was just too much. My brain went ‘numb’. I was in serious sensory overload. I could only manage basic functions. I just sat where I was. With my hands over my ears I muted the general noises around me. For the next half hour I focused on getting my sensory loading to level off and help me relax. Eventually I managed to read for awhile. Conversation would have been difficult.
Not long after I had started to read again there was an unexpected blast from the horn. There had been no second horn blast on the way to the island. While most would describe the sound as ‘ear piercing’ to me it was ‘brain piercing’. Having the second blast so soon after the first one was devastating. While it might sound melodramatic, my best description is that is felt like my brain had been split open. The effect was exponentially worse than the first one. (Think of it as hitting your finger with a hammer the second time within the same hour.)
The effect of the second horn blast took me much longer to cover. The sensory overload that resulted set me back several hours before I was able to engage with others.
One of the side effects of the ‘brain piercing’ event is experiencing ghosting. (Some people call it double vision.) Everything I looked at had a shadow. I wear progressive bifocals and so I can experimented with looking at things through different parts of my glasses. It didn’t change anything.
By evening I found it impossible to focus. Only nearby objects were clear enough enabling me to still read. Thankfully by the next morning the ghosting had cleared.
Developing the knowledge to manage ones sensory loading had a direct bearing on ones quality of life. Some factors to consider to reduce the repeated occurrence of sensory overload can be summarized as:
Every sensory input affects ones sensory loading, including thoughts.
Sensory loading can and will be carried over from the previous day or days.
Certain sensory events can be tolerated if ones sensory loading isn’t too close to the limit.
There’s no clear measure to know how close one is to reaching sensory overload.
The recovery time will depend on the nature of the sensory loading and the intensity of the sensory event.
Each person needs to find an effective recovery strategy that works for them.
Ones resilience to sensory input will increase the longer sensory overload is avoided.
Acquired Brain Injury (ABI) is different with every person. The severity of the injury and the areas of the brain that are affected makes each injury unique. There might be lessons learned from others but each person becomes their own detective in learning to live with the injury.
The above list is a summary based on my experiences. I would love to hear from others based on personal experiences. What would you add to the list? What would you modify from this list?